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You are here: Home / Blog / TTTS, SIUGR, and a Premature Birth

TTTS, SIUGR, and a Premature Birth

December 5, 2016 By Shann 20 Comments

TTTS, SIUGR, and Premature Birth

Since December is Twin to Twin Transfusion Syndrome (TTTS) Awareness Month, I wanted to bring you a special Micro Preemie story that is close to my heart. If you’ve been a long-time reader of my blog, then you know my twins  suffered from TTTS, SIUGR, and an extremely premature birth.

Today’s micro preemie twins fought a similar battle, but of course, their journey is all their own.

As a part of the TTTS, SIUGR (Selective Intrauterine Growth Restriction) community and support groups, I have actually followed today’s family’s journey from the very beginning. It is a truly amazing story, and I’m so happy to be able to share it with you to raise awareness for all three of these conditions.

In case you are not familiar:

From www.tttsfoundation.org, Twin to Twin Transfusion Syndrome (TTTS)  is a disease of the placenta (or afterbirth) that affects identical twin pregnancies. TTTS affects identical twins (or higher multiple gestations), who share a common monochorionic placenta.

From www.chop.edu, Selective intrauterine growth restriction (SIUGR) occurs when there is unequal placental sharing which leads to suboptimal growth of one twin. In cases of sIUGR, the estimated fetal weight of the smaller, growth-restricted twin usually falls below the 10th percentile. This will usually result in more than a 25 percent weight difference between the twins.

Now, let’s meet Identical twins Rachel and Evelyn, as told by their Dad, Neil.

These twins faced an epic battle against TTTS, SIUGR, and a premature birth. Read their story to spread awareness and bring hope to others who may experience this.
Rachel in the NICU about 10 days old

Rachel and Evelyn

1.  Tell us about your babies

Our identical twin girls, Rachel & Evelyn, were born at 28+3 weeks. Delivered by emergency c-section.
Evelyn was an average weight for a 28 weeker at 1260 g (2 lbs 12 oz). But her sister Rachel was a mere 330 g (11.6 ounces).  That’s an almost unheard of 73.8% growth discordance!
TTTS, SIUGR, and the NICU during a premature birth
Evelyn in the NICU, having a “bucket bath”, about 5 weeks old

2.  How long was your NICU stay?  What was the hardest part? 

Evelyn was only in hospital for 70 days total (51 days in the same NICU as her sister, and an additional 19 days in the step-down unit at a different hospital)
Rachel stayed in the NICU for 135 days.
With such an extended NICU stay, the ‘hardest’ things changed as time went on.  In the early days, it was the uncertainty. Rachel in particular was really on the knife’s edge of survival, so every day seemed to bring a new challenge. And there is the total exhaustion (physical, mental and emotional), functioning on nothing but adrenaline and caffeine.
As time went on, the hardest part became dividing our time between the NICU (and for a while, two different hospitals) and our other two young children who were at home.  Being in a NICU that allowed siblings to visit was a huge help in that regard, but daily visits still added up to a logistical nightmare. Travel, parking, meals – tired (and occasionally cranky) 2 & 4 year olds.
TTTS, SIUGR
Rachel & Evelyn around Christmas time 2013 (6 months old)

3. Do you know what caused your baby’s prematurity? 

Yes, a combination of things.
At 20 weeks, we were diagnosed with TTTS (stage 3); and Rachel, who was the TTTS ‘donor’ twin was also diagnosed with severe, symmetrical SIUGR.  Those conditions were closely monitored with scans every 2-3 days from diagnosis to delivery.
At 24 weeks, they had the laser ablation surgery for the TTTS.
TTTS, SIUGR
Rachel & Evelyn at 1 year corrected (August 2014)

4. How are you and your babies doing today?

The girls are now 3 1/2 years old, and everyone is doing quite well.
Rachel continues to receive various early-intervention therapies (OT, PT, speech), but largely keeps up with her twin sister.  She’s been on a feeding tube ever since the NICU but has recently started to make good progress with her feeding therapy. Our hope is that by school-age she’ll be doing a lot more oral feeding.
TTTS, SIUGR
Top Pic: Rachel & Evelyn around age 2, winter of 2015
Bottom:Rachel & Evelyn at age 3, Summer of 2016

5. What advice would you give to a new Micro preemie parent?

In the early days take things a day at a time and just be there.  Of course you’re an advocate for your child, but things really are largely beyond our control.  Being there with your child/children is what’s important.
Also, accept whatever help is offered by friends and family.  You have enough on your plate to deal with.  If someone offers to make some meals for you, or to check on your pets for you while you’re at the hospital – graciously accept those offers.  Every other part of your life that you can set aside for a while, is more time you can spend with your child, or dealing with the new challenges you’ll be facing.
And one last note – time moves on, and at some point all of this will be in your past.  My girls are 3 now, and those years have already flown past in the blink of an eye.
TTTS, SIUGR
Rachel & Evelyn now. Age 3.5 years. World Prematurity Day 2016

Awareness

Thank you so much to Neil and his family for sharing their story and their beautiful girls. They are truly miracles.

If you, or someone you know, is pregnant with twins, early monitoring is key. It is so important to find out if they are sharing a placenta, and to find a Maternal Fetal Medicine Specialist. Twin pregnancies can be very complicated, so please get all the information you can.

To find out more please visit The Twin to Twin Transfusion Syndrome Foundation Website or their Facebook Page.

Please leave any supportive comments for Neil, Rachel, and Evelyn below.

If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Filed Under: Blog, Micro Preemie Mondays Tagged With: CHOP, feeding tube, g-tube, micro preemie, NICU, ot, physical therapy, preemie, premature birth, pt, selective intrauterine growth restriction, siugr, therapy, TTTS, TTTS Foundation, Twin to Twin Transfusion Syndrom

Comments

  1. shelah moss says

    December 5, 2016 at 9:51 am

    Such little fighters! What an amazing story!

    Reply
  2. Small Town So(Lace) says

    December 5, 2016 at 9:52 am

    Oh my goodness. I loved seeing how your girls have grown into smiley healthy happy looking little kiddos! What a beautiful blessing.

    Reply
  3. Stacy taylor says

    December 5, 2016 at 11:19 am

    Oh my, what an adventure these girls have had. I’m so happy to hear they are healthy And doing well.

    Reply
  4. Stef@CraftyChristian says

    December 5, 2016 at 11:26 am

    So good that they are doing so well now! Modern medicine is amazing!

    Reply
  5. Amanda Deavers Winter says

    December 5, 2016 at 11:29 am

    Thank you for posting, very brave to talk about such a difficult situation. This will help other mothers going through the same thing.

    Reply
  6. Belle Bermudez-Tubel says

    December 5, 2016 at 12:43 pm

    Love this! Very informative!

    One Awesome Momma

    Reply
  7. Elizabeth Doren says

    December 5, 2016 at 4:55 pm

    Best of luck to your twins and them. Great story.

    Reply
  8. hzajac13 says

    December 5, 2016 at 10:24 pm

    I didn’t even know about this. Thanks for sharing. I am so glad these twins are doing okay.

    Reply
  9. My Daily She says

    December 6, 2016 at 12:21 am

    Wow! I’m so thrilled that both girls are okay, and my heart goes out to their parents–and all parents with children in similar situations.

    Reply
  10. Jaclyn Bree says

    December 6, 2016 at 2:38 am

    What a great story 🙂 My husband has a lot of twins in his family so I consider myself lucky (but also unlucky because I wouldn’t actually have minded) that I haven’t conceived twins yet. Everyone tells me it doesn’t work that way but . . . there’s seriously a LOT of twins in his family!! I had never heard of these issues until now, and I’m glad that I’m better informed now.

    Reply
  11. Georgiana says

    December 6, 2016 at 9:33 am

    11 ounces???? WOW. That’s just amazing. I love a happy story like this, and so glad the twins are doing well.

    Reply
  12. Raquel Harbin says

    December 6, 2016 at 11:08 am

    They are beautiful. Thank you for bringing more awareness to this!

    Reply
  13. Amanda Marie says

    December 6, 2016 at 2:57 pm

    Beautiful babies!! They are fighters!

    Reply
  14. Julie S. says

    December 6, 2016 at 9:47 pm

    Very great awareness post and happy to hear the girls are doing well now and all that scary stuff is in the past.

    Reply
  15. Samantha Broyles says

    December 8, 2016 at 12:03 pm

    What beautiful babies. I am so glad to see they are doing well!

    Reply
  16. Shortsweetmom says

    December 8, 2016 at 8:41 pm

    Thank you for sharing this families story. I have a friend who dealt with TTTS during her pregnancy with identical twins. It is something that really talked about. It is wonderful that you are bringing awareness.

    Reply
  17. Fullest Mom says

    December 8, 2016 at 9:43 pm

    To see their smiling faces warms my heart. 3 and 1/2 years is a long time. I’m glad they are doing so well. I couldn’t imagine what it was like to have them in the NICU for so long.

    Reply
  18. Mothre Fathre says

    December 18, 2016 at 4:21 pm

    Wow. They are 2 strong fighters! I’m glad to hear they are currently doing well. Thank you for sharing their story!

    Reply

Trackbacks

  1. Placing Blame: A Preemie Mom's Struggle - Shann Eva's Blog says:
    June 4, 2018 at 6:02 am

    […] couldn’t understand why my twins had developed TTTS/SIUGR and why my placenta wasn’t enough to feed them both. I tried to do everything right during my […]

    Reply
  2. Scopes and Solutions to Pregnancy Related Health Issues - Shann Eva's Blog says:
    February 6, 2020 at 1:19 pm

    […] wasn’t that long because my second pregnancy was cut short. It included much worse horrors, TTTS and SIUGR, both diseases of the […]

    Reply

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Meet Shann

Shann Hi! I'm a mom, writer, and dancer. I love sharing my parenting experiences, my healthy living tips, my money saving ideas, and our travel plans. My passion to help other women inspired this blog. I hope you'll stay a while and come back often.

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